Clinical trial at MD Anderson to see if Feraheme helps to see cancerous lymph nodes

There is another clinical trial at NIH as well (NCT02141490). I think both clinical trials are looking for some evidence of LN enlargement - but definitely check with them. It's a LOT cheaper than going with Sand Lake imaging - I think they only accept referrals from Dattoli or Snuffy Myers. Dr. Harisinghani at Mass General has also been using it. Another option is taking a trip to Radboud University Hospital in Holland as John T did. They have more experience with it than anyone else, and it may wind up being cheaper including airfare than the cost in the US.

- Allen

Bob said...
the real issue is if nodes are involved can he radiate them without SEs and cure the PCa or as a Gleason 9 is it simply too aggressive and already way out of the barn?

Yes, I agree those are the big questions. One thing that may help avoid SEs is having a lot of visceral fat.It's like having a built-in spacer protecting the upper bowel. So, eat up! I don't know how to definitively rule out systemic micrometastases. There is a CellSearch test for circulating tumor cells, but just because there are cells in systemic circulation doesn't necessarily mean they are the kinds of sticky cells that can cause metastases. As the doctor said, many may have been released by the surgery, but that doesn't mean they are capable of forming mets.

If you do go through pelvic LN radiation, you might want to consider immune augmentation the way Nomar Schottzenkeister did. Even if you can't get Provenge, there are other, cheaper immune stimulants like Leukine or low-dose cyclophosphamide.

- Allen

David
I just got off the phone with Ann at Dattoli who said no one was using feraheme anymore; they're using something else. I'm going down to SAnds to get the scans then probably the rad and ADT at
Bob

David
Sorry; I was caught in a downpour in my car as I was emailing and had to rush to a meeting.
I'm going to Sand Lake for whatever scans they do now. They say it's Two days vs three. Then I'll go to Dattoli for ADT and radiation of nodes assuming they find PCa in nodes. I think they said that even if scan finds nothing they will zap the nodes. I need to understand that before I consent. Not sure why they stopped using feraheme for scan. I was told that all Clinical trials and Bravo stopped using it. I'll find out more and communicate it to you all. Sounds like SEs or efficacy were an issue. Just guessing.
Bob

Bob, I have been away from the board for a while and just saw your post.

First about the Feraheme scans. I don't know where you got your info but they are still doing clinical trials with it. I just completed the 3 days of scans at the NIH. The lead doctor took great pains to read all of the scans and gave my Onco a very detailed report about the nodes found, sizes, and so on. I knew I had node involvement, but the trial allowed me to gain more info about when to go back on HT.

Sand Lake Imaging has been using Feraheme for years. BUT, for those years they were doing it OFF-LABEL. A few years ago I discussed this with my Onco, when I had a rising PSA and nothing was coming up on regular scans. We decided that there might be side effects and the fact that it was being done off label did not set with me. The NIH is totally prepared for any and all aspects of using this diagnostic agent.

You talk about radiating any nodes that may be found. But I see that you have already had SRT.

When I found my first two nodes through normal scans, I went to UCLA to have them radiated. I had sent all my records to Dr. Kupelian, Vice Chair of Radiation Oncology, and he said to come on out that radiating them was possible.

When I got there I suggested that we do the C11 scan, I had to pay for the contrast agent. The scan found two more nodes that had not shown up before.

At that point Dr Kupelian said that radiation was off the table and the next step was HT. Now UCLA is well know for advanced radiation procedures and pin-point accuracy. But having had SRT, Dr. K was really concerned about the potential of QoL affecting side effects from radiating the area required to cover the nodes.

I talked with Dattoli and Sand Lake back when I was looking into it a few years ago. They were very reassuring and about being able to zap anything the scans found. BUT they were also very up front that no matter what they found or what they did, HT was still going to be part of the equation. They were also very up front about the potential for radiation damage and side effects.

Just thought I would provide this info to you, for what its worth. Nothing about treating Pca is a slam dunk. It seems like the possible SEs of treatment are not given the weight they should when talking to anyone about any form of treatment.

Sonny

Sonny

I'll call you but for your and other readers' information I had ten nodes removed, all clear ,when I had my open RP at Johns Hopkins in 2013. When I had SRT after BCR, nodes were NOT irradiated, thinking that since they were found to be clear, they didn't need IMRT. Just the prostate bed wsa done with emphasis on area of positive margins, the bladder neck. While on Lupron, I had undetectable psa. When I came off Lupron after two 3 month shots, psa started to climb again. SEs from SRT were intestinal problems (constipation and diarrhea)and fatigue and bleeding which turned out to be from radiation to the rectum causing capillaries to be singed. It's nothing I can't deal with but I certainly would not want any more problems with my rectum or to my bladder. If lymph nodes are in fact now involved I would not have IMRT unless I could be assured that no further damage would be caused.

As I said, when I spoke to Dattoli's nurse yesterday she told me ferahame was no longer being used at Sands nor anywhere else. I will confirm this and find out why and if the scanning method now being used can accurately find mets.
Bob

Allen
If so why do you think they switched?
Bob

We've been to Sand Lake several times for feraheme imaging (which was amazing, BTW) but were told those days were over. This was months ago and I didn't take notes on it, so we're relying on my terrible memory here, but I feel like I was told they discovered a very serious interaction or risk for people with diabetes, and the off label usage was no longer acceptable.

Met with local MO who said if I follow protocol of ADT I'll be dead in five years! How's that for pulling no punches and lousy bedside manner?!

Tall Allen said...
Probably because Jelle Barentsz at Radboud was reporting better results with Combidex. He says that Combidex has fewer false positives than Feraheme.

Jelle Barentsz prefers Combidex to Feraheme

For some reason clicking that link does not work for me in Firefox, but cutting and pasting does.

https://askdrbarken.wordpress.com/2014/09/30/combidex-dr-jelle-barentsz-discusses-the-latest-about-this-imaging-test/

Workaround works for me in Firefox.

Anyone have any input or comments about morphologic imaging?